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Multiple Spread


#1

I went to the Royal Marsden last Thursday for my 6th month scan, I had an MRI of the lower abdomen only and the results came back with 6 new tumours spread around inside and outside the peritoneal cavity. The Proffessor has said there is nothing they can do, he has taken advice from collegues that surgery would make no difference and I have already had radiotherapy on a previous cancer so that’s not an option so chemo may be an only option to try and put me into remmission. I have asked that they try to do surgery as I am so desperate and feel that I cannot do nothing. The trouble is I don’t want to put myself through that and make myself ill if I only have a short time left. I do not know how long I have and I am too scared to ask. I need another PET scan to determine the true extent of the spread and if its in my lungs then no surgery anyway. How effective is chemo in putting this into remmission does anybody know? Any long trem success stories? The trouble is the extent of spread scares me so much, so far I know its in my bowel, bladder, scar tissue. I hate this, it is all too surreal and too much to take in, I am so scared to find out anything and of being in pain. I know whatever route I take wether to have surgery or not I will regret it and wish someone would just tell me what to do. I hope I can get some good advice from you. Becky. x


#2

Sorry to hear about the recurrence. It’s unlikely chemo will put you into complete remission although not impossible. Most likely, it will reduce the size of the tumors or keep them stable. What type of chemo are they offering? If there is a reduction in size with the chemo, will they be willing then to attempt surgery? A combination of both would be ideal in my opinion… Don’t give up yet!


#3

The standard first line chemo combo for sarcoma is called AIM (Adriamycin which is also called doxorubicin, Ifosfamide and Mesna). Synovial sarcoma tends to be very sensitive to ifosfamide. Sometimes high dose ifosfamide works better than AIM.


#4

Becky,

I would suggest the chemo you doctor wants to use. My husband has been able to control the multiple tumors with ifosomide since Nov of 2009. He has had a total of 13 tumors.(all have been in his abdomen)....he has has a couple of surgeries, but since Nov 2009, two months after surgery, had 5 tumors.....got the AIM .....for 5 treatments....it worked, then had the summer of 2010 off......and the ct scan in Nov 2010, he had 4 more tumors......because the treatments were very hard on him, they seperated the drugs.....had 3 doses of eperubion (spelling?)......and one of the 4 tumors mutated around that and grew from 4 cm to 12 cm.....they immediately went to ifosomide only in Jan 2011 and it is still working....he just received his 11th treatment of it.....we are down to 2 tumors about 2cm in size....


#5

Anytime you take some type of supplement, you should mention it to your oncologist. Sometimes, supplements can lower the efficiency of chemotherapy… I don’t know about chlorella and I am not sure if there is any data that shows its effects on chemo. It may be safer to stop taking the supplement during treatment.


#6

Becky,

I understand your thoughts. As a spouse, I have some of the same thoughts, and I'm sure that the patient has a series of their own feelings. I am hopeful that your oncologist will have a plan for treatment. I am looking forward to hearing his plan for your healing. Remember, your not alone in this battle. Debbie


#7

Hi,

My son had Synovial in his knee. He had 35 rounds of radiation,chemo and various surgerys. Unfortunately he went to heaven in March. We were planning on going to Lyon, France. They have a Frizzle gene trial that is the only one known to kill the synovial tumors in mice.

it is expected to begin in this September. This is the radio-immunotherapy which brings radioactive substance specifically to
desease site. As strong efficacy is expected, no Chemo is attached to this therapy.
I hope this therapy will be able to cure the patients fighting with synovial sarcoma

Contact Dr. at ■■■■■■■■■■■■■■■■■■■■■■■■■■■■. God Bless!
Debbie Kertz said:

Becky,

I understand your thoughts. As a spouse, I have some of the same thoughts, and I'm sure that the patient has a series of their own feelings. I am hopeful that your oncologist will have a plan for treatment. I am looking forward to hearing his plan for your healing. Remember, your not alone in this battle. Debbie


#8

Hi Becky,

Sorry, I don't have any more info and you should contact the Dr. Fukukawa at above email. If you want to go organic the Gerson Clinic in San Diego has had amazing results with many types of cancer but it is not covered by insurance and it costs about 10,000 for a two week stay at the hospital I just know that Chemo and radiation are only adjuvant and they don't work on Synovial Sarcoma. I am sorry. My,Nick was going to go to Gerson and if that didn't work France. He also tried a vaccine made from his own tumor to fight the cancer at Mary Crowley in Dallas Texas. But it did not work. Have your mom look into treatments in Europe they have a lot more than here in the USA. Heat treatment in Europe seems hopeful. I will be praying for you and If I hear of anything else will email you. God Bless You and your family.


Synovial Mom
Becky. said:

Thanks 'synovialmom' for your mesage. I would like more information if you have any you can give me? My email is ■■■■■■■■■■■■■■■ My Mum lives in France at the moment and wants me to go for treatment but I don't want to leave my children long term and go but willing to look into positive trials. xx